Craniosynostosis // Post-Op

Well, the doctor said to leave her steri strips on for another five days (unless they fall off by themselves, which a few already have). It made this momma and daddy cringe a little, knowing we'll have to take themselves off by ourselves.  Fortunately he gave us some tips for removal.  The exciting news?! Mia Kai looks great and we got the okay for going back out into public and for travel! We love our sweet Mia Kai and we praise God for His healing, strength and guidance through all of this!

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Craniosynostosis // Day Four

We are rejoicing this morning!!! Mia Kai's swelling has decreased dramatically and she even tried to smile at JD! She started wiggling when she tried to smile because she got so excited but then started crying because she realized she is still in pain. Sweet girl! She's trying so hard! She had a pretty great night. The nurses had to draw her bloodwork which she got pretty upset about but who wouldn't?? We cannot contain our excitement as we see our little one progress with healing so quickly! It's been a long three days but it also feels like it's flown by because of how quickly she's healing when we look at the long scheme of things. We praise God for healing our Little Pineapple so swiftly! She still has a ways to go with the swelling (particularly in the back of her head and the rest of her body) but she's doing so great! 

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Craniosynostosis // Day Three

MK had a fairly decent night. They had to draw blood from her arm because, once again, none of her IV lines would draw enough. It was awful. Besides that, she slept well. Her pain level still seems intolerable but the nurses are giving her a steady stream of meds and that's helping tremendously. Her temp is normal, heart beat is steady and her blood work came back okay. Her hematocrit level dropped again - not low enough to get another transfusion yet but it's at 24... If it drops any lower, they'll most likely need to give her more blood. Her sodium is a little low but nothing to be concerned about yet. Today we're celebrating the drain removal and her little left eye peeking out every so often, just to let us know she see us!!

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Craniosynostosis // Day Two

Last night was pretty awful. She's been in so much pain. Nurses have been taking exceptional care of her and she's been on a steady rotation of pain medicine. Her fever and heart rate got up pretty high. She is so over the nurses checking her all of the time. Haha! She ate well throughout the night but she's not eating great today. They started fluids again to help with hydration. They took her head dressing off this morning and have been able to take off two of her no-no's (little cast-like things to keep her from pulling on the lines). Her head is so round and bulbous now. We're astounded that we can already tell a difference in shape.

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Craniosynostosis // Day One

Surgery Day. We went in around 5:00 that morning, signed her in and waited. We were taken to the holding room around 7:00 am and the nurses and doctors came by to say good morning. They took her basic med info (blood pressure, temp, etc) then left us alone to love on Mia Kai before the nurses took her back to surgery. I cried a little but I think I got it all out the night before. It seems to be that this is the part that most parents have the toughest time with though. It's funny because we never thought her head was that misshapen until we saw how tall her head looks in the photos below.

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Craniosynostosis // Pre-Op

If you're following along with the 2017 Scripture Memory / Dwell Richly printable, here's the verse for week 8:

The Rock, his work is perfect, for all his ways are justice. A God of faithfulness and without iniquity, just and upright is he. Deuteronomy 32:4


june 26, 2017

It's been a long day of pokes and prodding for this little girl but she's been a champion through it all. So proud of this brave little girl! Pre-op testing seemed to be successful and we'll be going in tomorrow to get her precious little skull fixed.

I also wanted to share my heart from the night before surgery. Leading up to that night, our hearts were steady. Seeking Christ and trusting in everything He was doing. But it hit hard the night leading up to her surgery...

Loved. That is the best word I can use to describe how we've felt the past two weeks. Friends have given us baskets of snacks, everything we needed for the hospital stay and a special package that we were told not to open until the day of surgery (I'll get to that in a bit). The night before surgery, we were hanging out with our family in the hotel lobby. I tried to keep it together all day but it just hit. Hard. The emotions knocked me down like a crashing wave. I looked at JD and said, "I need some time. I'm going to head on up to the room." I walked into the hotel room alone and crumbled. Quick. I've never cried so hard in my life. It was the absolute definition of weeping. I couldn't tell you why or what I was even thinking. It was simply an overflow of my heart. All I could think was, "Jesus. Jesus. Jesus." It wasn't "why her?" or "help us!!" It was simply, "Jesus." Romans 8:26 played out so sweetly: "And the Holy Spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words." And then I started fizzling. I needed scripture. I needed Truth.

I texted a couple of my closest friends, basically saying, "I need Truth. Send me scripture." After sending a few verses, these texts came through from Katy Jo and Julie...

KJ: Also we talked and we want y'all to open that package tonight. We love you so so so much friend.

Julie: Yes. Agreed. Y'all should open it tonight. I think you are supposed to.

KJ: yes. We both agree - we think now is the time.

So JD and I opened the package and pulled out the most amazingly beautiful, thick journal. We turned to the first page, finding a sweet note from the McDaniel family, turned the page to find the perfect drawing from MK's little bestie, Ella Reese. The next page was a letter written from our neighbor... Then another neighbor... Then another... Ending with a final note from the Hardins. There were letters, prayers, cards and drawings from so many of our Huntsville friends. Friends from our new small group, old small groups, neighbors, Supper Club girlfriends, the list goes on and on. We read each page - me, balling my eyes out, and JD smiling ear to ear. We felt covered. Encouraged. Hopeful. At peace. Deeply loved.

During recovery, we've read that journal to Mia Kai when she gets fussy. We know the medicine helps but she calms down when we read her the letters and scripture from our friends. We know, that somehow, it brings her just as much as peace as we've received from it.

We look forward to the day we'll get to sit down with her and read through this journal when she gets older and understands the meaning behind it. We know so many people have been praying for us, more than we could ever imagine. We are deeply grateful to everyone who has walked this tough but victorious journey with us!

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We went to Chuy's in Nashville for dinner with our family the night before surgery. We were so incredibly grateful to have each of them with us! If you go to The Monroe Carell Jr. Children's Hospital at Vanderbilt, we recommend staying at the Embassy Suites. The staff was incredibly accommodating and friendly! It's close to the hospital and you get a free delicious breakfast. We were able to stay on Hilton points that we've accrued through JD's travels, just another way that God provided and showed us that He made a way for us.

Craniosynostosis // Blood Transfusion + Leading Up to Surgery

The main risk for the traditional surgery is blood loss. The hospital staff informed us that we would be able to directly donate our blood just in case Mia Kai needed a blood transfusion. Countless people offered to donate directly but they set a maximum limit of four donors, preferably blood relatives. The directed blood donations are performed via American Red Cross. According to the information they gave us from the American Red Cross: "Parents are given the option to do directed donations for blood for their child's craniofacial surgery. It is highly recommended that mom and/or dad should be the only donors for children under 1 year of age." All donors are required to know their blood types before donating. Be sure to know your baby's blood type as well, so that you can make sure everyone has a match that will be donating. Everyone in our family wanted to donate but several family members had things that prevented them from being able to do so (previous illnesses, anemia, pregnancy, etc.). Two weeks prior to surgery, JD donated plasma then Chase (my brother), Sonya (my aunt) and myself donated blood. Somehow they are able to separate the plasma from the blood they would be transfusing. We are so grateful for the ones who offered to donate blood and to those who were able to!

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Craniosynostosis // Diagnosis

"You may have noticed that her head is shaped a little funny..." our pediatrician said to us the morning we were discharged from the hospital. Mia Kai was three days old.

"No, but we did notice she has a lot of hair on her shoulders and back. Is that normal?" I asked him as JD and I laughed. My brother was born with a cone head so I was expecting that Mia Kai would have some kind of funny shaped head. It seemed like one of those 'normal abnormalities' the nurse mentioned during our childbirth classes.

Dr. Patz laughed and said, "It should round out over the next few days but if not, I'll check it again at her two week appointment." 

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Twenty-Nine

It's no secret that this past year has been one of the greatest yet most challenging years. Between welcoming our sweet little pineapple into our family and then completely giving up control as we handed her over to the nurses that took her into surgery (that blog post series will be starting next week), our Father has stretched our faith, sustained our family and strengthened the story of His goodness in our lives. 

We were carried by the prayers of His people, of our community. I look back and wonder how we made it through last year and my only explanation is Jesus. 

This past year drives me to be more grateful in every moment. More relational so that I can be as much of encouragement to others as they were to us in the seasons of celebrations and heartache. More fluid with my schedule, to always make time for prayer and people. More purposeful in each action, each conversation and each project (whether personal or for Jitneys).

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